johnny ur

Update - From one trial to the next edition.

A quick recap: After my last CT scan and ultrasounds, I was taken off the clinical trial I was on. That consisted of gemcitabine (gemzar) and a drug being developed by a Spanish pharmaceutical company called plitidepsin (or apeldine). The bad news is I have grown a new tumor in my liver - a small one, 1-2cm, near the dome, which luckily is not very dangerous health-wise. For this reason, it is considered that the cancer has "outsmarted" the gemcitabine drug.

The good news, however, is that activity in my lymph system has decreased significantly. Hopefully that will continue to happen and we can get the tumors under control as well as I start up on a new trial.

This new trial is for a drug developed by Abbott Labs in Illinois, named ABT-263 - which I assume is just the research name and if it ever gets to market will be called something different. That drug will be offered with "carbo-taxol" (carboplatin/paclitaxel). I have never heard of paclitaxel. Carboplatin is in the same family of drugs as cisplatin and oxaliplatin (platinum-based drugs).

I'm excited to try out a new treatment. I will be the first patient for this trial at CINJ (others will participate at another institution). But I'm also anxious/fearful of new side effects. I handled the previous drugs very well and now I'm a bit spoiled about feeling "pretty good" on most days. But I do this not only for myself, but for every person who has come before me, and those who will come after - - advancing medical science's knowledge of how these things work. They may not save me, but they may help someone else.

Update - June 26, Is this Summer? Edition

I'll bet that I frustrate some of you by not writing for lengthy periods of time. For most of you, hearing about my hospital visits and blood work and other data is something that is fulfilling - being able to stay up to date on my health, removing the cautious questions "so... how are you doing?" - but my extended absence has more to due with my boredom with tedious minutiae than it does with my sadistic desire to torture you all. Seriously. I'm not a sadist. Yet.

Since we last talked, I've been riding the rollercoaster as usual. The past 2-3 weeks have been very good for me. I'm up to 160 lbs - from my lowest and weakest of 140, but still down from what I consider to be my healthy weight of 170-180. This is a small miracle given that I've gained this weight during my chemo treatment over the last 2+ months. I credit much of that to the drugs prescribed to me by the doctors at CINJ. They have been fantastic about seeking the right chemical combination to return me back to a somewhat healthy life. Both of the anti-depressant pills that I take are appetite stimulants - Lexapro and Mirtazapine. And the Mirtazapine has the added benefit of causing sleepiness which has allowed me to stop taking Ambien which never gave me a satisfying sleep.

Most of my blood count numbers are cooperating, with the constant exception of my hemoglobins. I'm receiving an iron transfusion every week (and an occasional blood transfusion) to help keep that up - but I still am anemic to some degree. We're hoping that these iron transfusions will help my body to kickstart its own production of hemo-gremlins and we'll add Procrit to the mix - also to help that natural production. 

I've felt great over the past two weeks - even cutting the grass yesterday and cooking up some pan-seared scallops with couscous and green beans tonight - so I can't complain about that. However, this is a rollercoaster and what goes up...

...What went down is the results of my last CT scan show a new tumor. A little itsy-bitsy one about 1-2cm on the dome of my liver just under the diaphragm. Bad news: New tumor growth. Good news: It's in a location that does not pose a serious, immediate health risk (as opposed to in my lungs, spine or bile ducts). Bad news: This means I am longer in the clinical trial for plitidepsin and gemcitabine as the cancer has "out-smarted" the drugs. Good news: I helped scientific advancement with my participation in the trial (this is no small matter to me - in fact it's one of the main reasons I keep pushing through this) and I can now move on to other drug combinations.

Currently, I'm waiting to hear back from CINJ about another trial that they are running with a drug in combination with cisplatin. Good news: More scientific advancement. Bad news: Again I have to face the gun in a game of russian roulette with the side effect bullets loaded. Who knows how I'll react to these drugs. Good news: The time off from chemo allowed me to go to the dentist and get two major cavities taken care of. There was concern that a) if my platelet count was too low, I could bleed out during any procedure and b) both of the concerned teeth needed major work and possibly a root canal at the going rate of about $2000 per tooth. Luckily, my platelets were at 220 this week (whatever that number means) so no concerns about excessive bleeding and both teeth were able to be cleaned and filled without touching the nerve and without requiring root canals. Relief!

And so it goes. A number of months back, I was in a depressive state where I did not feel like doing anything - inside or outside of the house. Now, I'm enjoying reading again (just started David Foster Wallace's giganta-tome, Infinite Jest) and going outside whenever the rain lets up. 

You can maybe see why I don't update as frequently as before. I got other things on my mind, ya. But don't worry. Important stuff comes up and you'll be at least the fourth to know.

Cycle 2 Wrap-up

The summer time makes it very difficult for me to get motivated to post here. On the days when I'm feeling well, I prefer to be outside, reading a book or playing my guitar. On the days I don't feel well, I definitely do not feel like writing about it. Catch-22 and unfortunately, you, my adoring fans get the short end of the stick. But fear not, I have not disappeared and I will keep coming back to this journal page no matter how frequently or infrequently.

I'm just about wrapping up my second cycle through chemo. Received my third week's treatment yesterday (3 weeks of treatment and then one week off - which will be next week). I almost had another delay in treatment though as my blood tests came back with low white blood counts. Let me back up and explain how the treatment day works:

When I arrive at CINJ, usually between 7:30 and 8AM, the first step after sign in is to check my vitals: weight, blood pressure, and pulse. Then I go to a small private room - most people only get chairs in a common area, but I'm special since I'm in a clinical trial - and a nurse will come in and access my port. The port accessing procedure involves poking a large needle into the port (which does not hurt because I prep the area with lidocaine before I arrive). This needle is attached to the IV tubes where they feed me any drugs, fluids etc. that I need that day. The nurse can then flush the tubing and my port with saline first, and then blood is drawn from the same line. Again, no pain, hardly feel a thing - much more comfortable than a normal IV line in the arm.

The problem has been that, a number of times, my blood tests come back with low counts - usually hemoglobin or albumin or something; this time it was white blood cells - due to the fact that the blood is slightly diluted from the saline flush. So the solution has been to draw blood peripherally from my arm which has given a more accurate count on most occasions. So from now on, they will always do the blood draw from my arm instead of doing double work and causing us to worry.

Other than the stress of having to possibly postpone treatment again, things have been on the up and up for quite a few days now. After last week's treatment, I felt good on Tuesday before a rough Wednesday and Thursday. I had alot of fatigue and grade 1 nausea (yes, that is a medical term). It's that type of queasiness where you have overproduction of saliva in your mouth but you don't need to be sitting near the toilet 24-7. Not all that bad. Friday was a little better and then I had two great days of energy on Saturday and Sunday.

 Sarah and I went to NYC on Saturday to visit some friends of hers over from Germany. I met Bob Ryan - Sports Reporter who often appears on ESPN, and fellow New Jerseyan (he's from Trenton) - in Bryant Park. We took the Staten Island ferry for a free view of the city skyline and then headed up to Stuyvesant Town for a street fair. We finished off the day with a few hours in Central Park before heading home. Good weather, good times.

This week has started off well, too. I'm writing this while getting an iron transfusion - to help prop up my hemoglobins and stave off anemia. I'm always right on the border with my hemoglobin numbers. I need to be at 9.0 (whatever units) or else I can't receive treatment according to the clinical trial rules. I'm usually right at 9.0 to 10.5 when a normal person is up over 14.

But that's enough medical talk for today. I also wanted to share with you a project I worked on recently. One of the social workers here at CINJ (Brenda Bly) has been encouraging me to use my creativity to positively deal with cancer. She told me about a traveling exhibit that would be on display at CINJ for a few weeks at the beginning of June. After some discussion, I decided to do some self-portrait photography with the help of my friend, Izzy Ramirez. I'll post those photos here. Many thanks also to Colleen Grady for her handiwork with the hair shaver.

 I ended up laying the photos out into two 20x30 posters which are now on display in the lobby of CINJ. As I mentioned last week, this could turn into a larger project of photos of men with cancer, but I'm not going to jump the gun just yet. We'll see what happens.

With that, let me post some photos and get packed up. I'm just about done here at the Institute and am ready to take a nap! 

Update - May 31st

Another exciting week in the world of hospital visits.

I had been spiking fevers over the past few weeks. Normally, I would do the stupid thing and treat it at home with some Tylenol, plenty of water and a cold compress on my head. It almost always occurred in the evening around 10PM - absolutely the last thing I wanted to do at that hour would be to head to the hospital for an indeterminate amount of time. But with prodding from my doctor, I went to Raritan Bay Medical Center in Perth Amboy Monday evening.

My temperature was about 101.3 and Dr. Moss wanted to get blood cultures from me while the fever was active to try to locate a source for infection. Infection is the most likely cause for my fevers. Simple enough, right? Well after 5 hours, a chest x-ray, lots of IV fluids, blood cultures and some arguing with the doctor in the ER, I was finally able to leave Raritan Bay. Yikes.

Dr. Moss also wanted me to come to Robert Wood Johnson Hospital for IV antibiotics and other tests. I was admitted on Tuesday. This hospital experience was not bad in comparison to other visits I've had. On Wednesday, Dr. Ben-Menachem performed another ERCP on me. He removed one of my stents and replaced the other. This was a repeat of the same procedure I just had two weeks prior.

As Dr. Ben-Menachem explained, there is a build up of "junk" in my liver and bile ducts. The purpose of the stents is to keep the ducts open wide enough for that junk to flow out. The reason he removed one of the stents is that the right side of my biliary tree into the liver is constricted. The flow ain't got no flow. The stent wasn't helping this and he concluded it would be better not to block up anything even more than it was at present. The left side of the tree is wide open and functioning well with the stent.

The constriction on the right side is a bit of a concern. Ben-Menachem assured me that you can still live and function without any liver problems with just one side draining properly. However, this assumes that there will be no backup/build up in the liver. If bile does not drain from the liver, it could lead to cirrhosis and liver failure. To prevent that from happening, I may have to have another external drain placed - which I would am not looking forward to...

On Thursday, I had another catheter exchange for my gall bladder drain. The drain has been leaking at the entry site constantly for the past few weeks. This exchange and upsize should hopefully help by closing whatever gap there was between the tube and my skin. I actually just had this procedure done about 8 days prior - with no improvement on the leakage front. I had to laugh when one of the nurses  told me that the first time they went from a 10 to a 10.2. I thought to myself, "why even bother?" So this time, they went up to a 12. I wish it was an 11 only so I could quote Spinal Tap - "This one goes to eeeleven."

I was released (escaped? freed?) Friday morning after the team of doctors (oncologists, gastro specialists) decided to put me on semi-permanent antibiotics (Flagyll and Bactrim) to make sure I don't contract and infection and hopefully fight against any infection that was causing my fevers. So far it seems to be working as my temp hasn't gotten out of control since I've been out. However, being on antibiotics for a long time concerns me. Correct my medical knowledge if I'm wrong, but I think that antibiotics suppress your immune system a bit and also you can grow immune to them after prolonged use. I'm going to make an extra effort to counteract with probiotics, like those found in the yogurt I eat (Stonyfield Farms).

I've been feeling pretty good, even considering the fevers. I'm hoping to get back on track with the chemo treatments tomorrow. With that in mind, I'm receiving a blood transfusion today - while I type this to be exact. My darn hemoglobins keep jumping ship. We're still working on jump starting my body's ability to produce iron. I was taking iron supplements for awhile but it wasn't helping - my body wasn't absorbing it correctly. Dr. Moss has given me iron infusions twice now. One was before the last chemo session, the other was this past week while I was in the hospital. Once we can get things working again, she'll likely prescribe Procrit to help my body produce red blood cells and avoid anemia.

In related news, I did a photo shoot with Izzy Ramirez for an exhibit of "artwork" by cancer patients which will go on display at CINJ this week. The shoot was a self-portrait thing that included shaving a mohawk into my head (thanks Colleen!). I'll post some pictures after the exhibit is up and running. In conjunction with CINJ, I hope to turn this into a bigger project of photographing men with cancer, and possibly making a book out of it. Not to get ahead of myself, we know to expect the unexpected, but I'll keep you updated on its progress.

Update - May 19th

I guess it's been a little while since we've talked, eh? Things have been up and down here. I haven't received any chemotherapy treatments for various reasons: pain above my port, low hemoglobin counts and fever. It's hard to summarize everything in a few short paragraphs but let's give it a shot.

I've been having some pain in the catheter area above my port for a few weeks. We've run various tests for infections and then dye studies to see if fluid moved through correctly and other things. Everything comes up negative. The only explanation right now is that the clinical trial drug is irritating it. Strange. Oxycodone helps.

About a week and a half ago I went to the hospital with a very high fever. It was likely related to my bile duct stents. They were scheduled to be changed that Thursday - the fever started Tuesday night. Talk about timing. Almost 3 months to the day when the stents needed to be changed. That whole hospital trip was a hassle. Let's leave it at that...

This past Monday, I was ready to get treated again, finally... But then my hemoglobin count was too low - 8.9 when it needed to be 9.0. So now I'm scheduled for a blood transfusion... Whenever they can find blood that matches my type. O+ isn't difficult to find, but I've developed 4 antibodies that also need to be matched. Quite inconvenient.

For those of you who want to do something for me, please give strong consideration to giving blood. The likelihood of your blood and mine matching is very small, but it can help other people like me who need it. The larger the supply of blood in the banks, the easier it is to find matches for rare types.

Other than hospital and procedural hassles, I'm not feeling too bad. I am looking forward to getting back on some kind of routine, which should happen after this week of doctor visits and procedures. I'll try to keep you more updated than I have.

Cytotoxic Adventures, Parts 3 & 4

Last week was my third treatment and with tax season over, my dad (an accountant) was able to take some time out of the office and took me to CINJ. Nothing like a little father - son bonding over IV drugs and pre-made turkey sandwiches.

The day came very close to being a real short one. Every treatment day starts with blood being drawn from my port to check various blood count levels to make sure I can handle the drugs. My platelet count came back as 74. It needed to be 75 for treatment. Before pulling the plug on the day, Dr. Moss had the nurse draw a second sample - this one from my arm - with the thought that maybe the first sample was diluted with a bit of the saline that they use to flush my port. Good call on the Doc's part as the new count came back at 81. Some platelets must have been playing Hide N Go Seek. Luckily we found them.

For the non-medically trained, if your platelets are too low, your blood may not clot properly. This could cause uncontrollable bleeding. Usually they don't worry until the numbers fall down into the 50s. And a platelet transfusion isn't very helpful as the platelets would only stay in the system for about 24 hours (according to Dr. Moss). This is something to keep a watch on. At some point my platelets will likely be too low for this drug treatment and we'll either have to stop, switch drugs or lower the dosage. Expect the unexpected...

Besides that, the treatment day went by uneventfully. The side effects this week were a bit more noticeable. The 2 days of fatigue stretched out to 4-5 days of fatigue. I was sleeping about 10-12 hours during the night, napping once or twice during the day and still going to bed by 12 or 1AM. Luckily this fatigue hasn't been as debilitating as that from chemoembolization (CE). I can still get up and do things, I just have a shorter window of time when I feel like doing them. During the CE treatments, I didn't want to get off the couch for anything.

Also this week, I felt a bit nauseous. And this is hard to explain to everyone because as soon as I hear the word nauseous, I think of someone kneeling near the toilet readying to retch at any moment. This is not the case for me. My nausea is just a period when my stomach is uncomfortable and food is very unappealing to me. Again, it's not a debilitating feeling. It's an annoyance that I mostly was able to control with Zofran and some pretzels. This lasted about 3-4 days and mostly occurred in the evening after dinner.

But after these side effects settled down, I started feeling good. Maybe the nice weather is playing a part in it, but I feel rejuvenated. Saturday, I went to Queens with Chris Riquinha to see the Mets beat up on the Nationals at their new stadium. Wonderful day with great weather. Sunday, I spent some time in a hammock reading Angels and Demons (the literary equivalent of fried chicken - quick and enjoyable but hardly gourmet). And I'm looking forward to making a trip this weekend to Connecticut to see some friends.

With this week off from treatment, I'm looking forward to having energy, sunshine and fun. But then again, expect the unexpected...

Cytotoxic Adventures, Part 2

After last week's breeze through treatment, I was expecting more of the same this week. But as in every hospital or clinic visit, I've learned to expect the unexpected.

My infusion of gemcitabine went as planned. But just a few seconds after starting the infusion of plitidepsin (the clinical trial drug), I knew something was wrong. My chest tightened and I found it difficult to breathe. I knew I must be having an allergic reaction to the drug. I had read through all of the possible side effects and I'm sure this was listed as one. I immediately called for the nurse.

Two nurses came rushing into my room to stop the infusion and it seemed like most of the rest of the nursing staff was starting to gather around my room - it must have been a slow day. My face turned extremely red - it felt like the hottest fever I could ever imagine - and the blood vessels in my neck became very tight. My throat constricted and I decided I better lay down and relax. I started breathing through my nose very slowly. I knew if I panicked, it would only make things worse and it would make air even more difficult to breathe.

I lay there for what seems like eternity before the symptoms subsided. It was probably only a few minutes. As my blood returned to it's normal resting place (everywhere besides my head), I felt fine again. A long discussion ensued about what to do with me. Should they continue the treatment at all? Should it continue there (at CINJ) or in Robert Wood Johnson Hospital? (CINJ was closing at 6PM and it was already 5:15). At this point I shout into the hallway, "Do I have any say in this matter?" A nurse comes in and says, "Of course, you're the patient." "Then I'll come back tomorrow thanks." My mother and I proceeded over to Old Man Rafferty's in New Brunswick where I had a prime rib dinner.

And with that, I returned the next day. The doubled up the steroids and benadryl to hopefully stave off any reaction and the infusion was done very slowly over the course of 2.5 hours, rather than one. No problems.

Side effects this week were fatigue, as per usual, this time more than two days and a little bit of diarrhea. But that could have been the result of eating too much unhealthy fried foods over the past two days.

Monday is week three of chemo. The following week is only blood work, so I hope to feel good for a period of longer than a few days. Fingers crossed. I hope you feel good too. 

Cytotoxic Adventures, Part 1

Last Monday, I started systemic chemotherapy at the Cancer Institute of New Jersey (CINJ) in New Brunswick. My regimen includes an injection of gemcitabine, a cytotoxic drug that kills cancer cells and is often prescribed for cholangiocarcinoma, followed by a new drug being developed by a Spanish pharmaceutical company, named Pharmamar. This new drug is plitidepsin (also called apeldine) and is being tested in this Phase 1 clinical trial at CINJ for its effectiveness and toxicity.

It wasn't until Monday morning that I found out that I was accepted into the trial. The week prior, I had been told yes, and then told maybe not because some of my blood levels were out of whack. Luckily, everything came under control with the help of last week's blood transfusion and then some iron supplements. So I'm in. Which could be good - access to a new drug which may not come to market for 3-5 years - or bad - serving as a guinea pig to see how much toxicity my body can handle.

After the first week, I have to say I feel pretty good. The largest side effect I've felt is fatigue and the level of that fatigue varies on the day. One of the doctor's at CINJ prescribed Ritalin to help counteract that fatigue and it seems to work ok - at least for a few hours each day. To a lesser extent, I've felt slight twinges of nausea (controlled by Zofran) and a muscle cramp or two (fixed up with Oxycodone). Better living through chemistry, right? Now, if I can just get my night sweats under control.

This week was a busy one with trips to CINJ every day for blood work necessary for the trial. Next week and the weeks after get easier with just the long day of injection on Monday (about 5-6 hours from arrival to departure). I hope each week passes by as easily as this one has and that my blood counts stay high and keep me healthy. For anyone suffering side effects from chemo, I highly recommend asking your doctor for presciptions to counteract anything that feels wrong. It seems like they have at least one (sometimes more) answers for everything. And feeling good makes all the difference.

Happy holidays everyone.

Update - March 26th Die, Die, Die My Darling Edition

Before any freaks out about the title of this post, let me explain. It's a song title from the Misfits and I use it with a big smile on my face. I received a phone call from Dr. Geschwind's colleague this morning to review the findings from the MRI that I had on Tuesday at Johns Hopkins.

According to Dr. Geschwind, I had a "fantastic response" to the chemoembolization treatments. The tumor on my right lobe has shrunk by about 1.5 cm from 6.5 cm to 5.0 cm. Also much of the tumor seems to be in a state of necrosis. This means it's dead. So I sing "Die, die, die my darling!" in my best punk growl.

It's actually not completely dead. There could be some living cancer cells on the edge of the tumor that are too hard to see in the scan. But with the majority of the tumor being killed off, there is very little chance that it will grow anytime soon. This was a major issuee when I was first diagnosed because this tumor could block off my bile ducts if it expanded and then I would have major health problems and possibly liver failure. By getting it's growth under control, I have bought myself time to fight against the tumor that is in the left lobe of my liver and the cancer cells in my lymphatic system.

This news, which I received today, caps off a busy few days as far as my health and medical status go. Last Friday, I had a port installed under the skin in my chest. This port will allow a nurse to hook up an IV for me to receive chemotherapy treatment without having to poke my arm. Saturday morning, I was experiencing some new, sharp pain in my abdomen which warranted a visit to the emergency room. Oh the stories and frustrations I could speak of, but suffice to say, I was happy to leave the next day after no doctor could figure out what was wrong with me. 

On Monday, I met with Dr. Rebecca Moss, my oncologist at the Cancer Institute of NJ (affiliated with Robert Wood Johnson Hospital and UMDNJ). We spoke about starting systemic chemotherapy soon. The main purpose of this chemo regimen would be to try to clear my lymph system of cancerous cells - something that can't be done with localized treatment like chemoembolization. Dr. Moss convinced me to be in a clinical trial which will combine the drugs gemcitabine (which is pretty standard in the treatment of cholangiocarcinoma) with a new drug called plitidepsin. My thoughts are that I can always step out of the clinical trial if things aren't going well, but I can't get in if I start a different regimen first. This clinical trial will start April 6th for me. I'll be participating for at least two months, possibly longer. Hopefully, besides clearing my lymph system, the chemo will also attack the tumors on my liver.

Tuesday, Sarah and I went down to Baltimore for the aforementioned MRI. We spent some times with friends of mine from DC and Baltimore and then returned on Wednesday. And here we are on Thursday and the good news comes on the phone... Things are looking up - but there's still a long way to go.

Until April 6th, I don't have much going on. Sarah and I may make a short trip out of town to visit my relatives in South Jersey. I do have to go to the Cancer Institute on Monday for a blood transfusion as my hemoglobin count is low. This means I'm a bit anemic and would explain my overall fatigue over the past few weeks. Hopefully the new blood will give me some good energy. And telepathic powers.

Update - March 19th Port Edition

It's about time I update again, lest everyone worries that I've disappeared. Frankly for the past two weeks, I wish I could have disappeared. I was feeling, as could best be described by a 4 year old as, "yucky". Truthfully, all I wanted to do was sleep. It was the only time that I felt good.

The fatigue that comes with chemotherapy drugs - whether through systemic chemo or chemoembolization, like what I had - is absolutely the worst side effect. No amount of sleep can restore you. No amount of food can bring you energy. For a day or two, this isn't a big deal. So you're tired? Who cares right? We've all been run down for a few days - not felt like doing anything. But when that fatigue starts stretching into week two, it starts messing with your head, let me tell you.

Without dwelling too much on depression and all that entails (I mentioned it a bit in the past), let's just say I am pleased to have turned the corner and be on the sunnier side of the street. As luck would have it, the first day I would have any decent amount of energy was this past Tuesday, St. Patrick's Day, my 30th birthday. I was lucky to have a couple friends come over and share some pizza, desserts and fart jokes. Doesn't get much better than that right?

Back to the medical info (which I always like to post in detail for random people searching the web for experiences):
I saw Dr. Rueda-Lara at the Cancer Institute of NJ (Psychiatrist). I find that she is a wonderful person to talk to and she's great at trying to work out the right drugs to help me feel better. Last month she put me on Lexapro which is an anti-depressant. Lexapro takes about a month to kick in, so I should be feeling that at some time in the near future. Most recently she prescribed Provigil which is a drug sometimes prescribed to those with narcolepsy or sleep apnea to give them energy and occasionally helps with appetite stimulation. I'm not quite sure how well it's working (or if) as my internal energy is quite screwy right now. I'm not sleeping well despite Ambien (for sleep) and Atavan (for anxiety) but I have much more energy than the previous two weeks. Jury is still out on Provigil.

Tomorrow, I go for a quick procedure to install a port under the skin on my chest. Though I'm actually a bit nervous about the procedure (unfoundedly so - but I get nervous anytime my veins and arteries are messed with), I'm looking forward to having the piece so drawing blood and starting IVs will be easier than going through my arm. This is also a bit of a necessity for my systemic chemotherapy... which leads me to...

I'll probably be starting systemic chemo very soon (within the next few weeks). Next week, I'm making a quick trip to Baltimore to meet with Dr. Geschwind to review how things have gone with the chemoembolization. But unfortunately, my cancer is not localized to my liver. It has metastisized to my lymph nodes which means it's in my lymph system and thus cancer cells could be anywhere in my body. This will be done at the Cancer Institute of NJ (which is associated with Robert Wood Johnson Hospital). Though I'm not looking forward to it all, I know this is just another step I have to take to try to get healthy again.

Other than that, the excitement in my life rests in March Madness. Sarah is not very happy about this. Oh well.

Update - March 6th, Second chemoembolization treatment

The second treatment has been a bit rougher than the first. My first treatment left me with alot of fatigue and some low grade fevers but not many other symptoms. This time, nausea, headaches, stomachaches and fatigue along with the fevers have caused a loss of appetite. Thank goodness for oxycodone. Every day is a little better so hopefully tomorrow is better than today. On that note, time for drugs and bed and a shot at another day.

Update - March 1st

Just when I start to feel close to normal after my gallbladder drain operation, it starts to snow. Oh, and I have to go back to Baltimore for my second chemoembolization treatment. Mom and I will take the train down tomorrow - I have an MRI scheduled at 5:30PM - and then on Tuesday, my treatment is scheduled for early in the morning. I'll stay overnight and head back home on Wednesday. Hopefully, the snow will clear for the ride back.

Update - Sunday February 22nd, Drained Edition

I'm moving much slower today, two days after having an external drain placed into my gallbladder leading to a bag strapped to my leg. The Amazing Adventures of BagMan!! have begun. I've long dreaded the day I'd have to wear an external bag to drain my internal fluids. I've had ulcerative colitis since 1996 and the possibility always existed that someday my large intestine would have to be removed and I might have to wear a pouch to collect fluids. But truth be told, it's really not as bad as I expected it would be... yet. It's only been two days. Talk to me in a month. And by then, we might be able to remove it, since this is not a permanent solution.

But I'm getting ahead of myself... Let's back up one week.

While trying to relax in Florida, I woke one night with sharp pains in my right abdomen - the region of the gallbladder and liver for those not keeping score - and went to the hospital the next day. One CT scan later, they told me I have an inflamed gallbladder (geniuses, these doctors, I'll tell you). That's unfair, I guess - if I was going to be there permanently, they'd probably do something to help me. But since I was scheduled for the a flight back to NJ the next day, they just gave me some percosets and wished me luck getting on the plane and getting home.

Fast forward to a few days ago and Dr. Ben-Menachem scheduled me for another ERCP procedure in conjunction with an Interventional Radiologist who would drain my gallbladder externally and then hopefully lead Dr. Ben-Menachem's stent through the cystic duct. Unfortunately, the cystic duct is still too occluded and according to Dr. Ben-Menachem, there was way too much "junk" in the gallbladder which was causing all the pain - stuff that would have easily have caused a serious infection had it gone untreated.

So now, pain from the gallbladder is gone. Temporary pain has taken its place at the site of the incision. I feel inhibited from using my abdominal muscles as any quick contraction (coughing, laughing, squeezing) causes a sharp pain. This should relent in a few days (with the help of the percosets) and life will return somewhat back to normal (sans showers which are now off-limits to avoid getting my incision dressing wet).

Future? Not sure. Gallbladder could be removed (many complications associated with that right now). A stent in the cystic duct is a possibility if chemo helps shrink the tumor cells around it. For the time being, I'm learning to live with this bag and trying to cope with my girlfriend going away for a few weeks to visit her friends and family - leaving me completely high and dry as far as taking care of myself. The nerve of some people, right? Eh, I'll just take some more percosets.

RPLCE my ERCP, PLSE

Ok, I lied. I don't have an ERCP. ERCP is a name of a procedure which stands for Erase Records Control Protocol. It's a secret government program to brainwash all of it's citizens. OK, that's not true either. ERCP really stands for Endoscopic Retrograde Cholangiopancreatography which might as well mean brainwashing for all I know. OK, that's strike 3. Endoscopic in my layman's terms is sticking a videoscope down through the mouth and the Cholangiopancreatography means the doc is going to look at the bile ducts (cholangio-) and/or the pancreas. I don't know why the word Retrograde is in there - personally, I'd feel better if they went Professional Grade or something like that. But what's done is done.

So the first time I had an ERCP was back on Christmas Eve to place a stent in the cystic duct to drain my gallbladder. Though leaving me with a slightly irritated throat, it was relatively painless and relieved the majority of my discomfort. 6 weeks after that first procedure, I needed to get the stent replaced. Since it is a plastic and not metal stent, it is slightly weaker but more easily removed.

I was knocked out by the Happy Juice on Thursday morning and when I woke the doctor had both good and bad news for me. The bad news was that he could not replace the stent, he could only remove it because the cystic duct has become completely occluded (closed off) from cancer cells - which he was quick to note, could be living or dead.

This is not a horrible thing. First, the body can survive without the gall bladder which serves as a reservoir for extra bile produced by the liver. The gall bladder can also live on without pushing bile through the cystic duct. Second, because the duct i closed off, nothing can enter nor escape so theoretically, it should not swell anymore. If it does, there are other drainage options available to me before it needs to be removed. We'll wait and see how things develop.

Doc (Dr. Tamir Ben-Menachem) was able to put a stent into my bile duct that leads into the liver which in many ways is more important because I was showing the very beginning stages of jaundice - slight yellowing of the eyes, a bit of itching in my feet. Too much of that would lead to poisoning of my blood because of bile back up. So, all in all, not a bad trade off.

However, the procedure may have left me with a bit of an infection. They gave me an antibiotic to fight it off but I was still running a fever over the past few days. Luckily they upped the dosage and it's been under control mostly, not rising over 101 - which would have triggered a return trip to the hospital for IV antibiotics.

I'm hoping that everything remains under control for the next few days. I'm going to escape the winter blues on Wednesday for a few days with a trip to see my aunt and uncle in sunny Florida. I'm sure sun and fresh air will be great for my health and morale. Even today's 50 degree weather was a welcome respite. Keep it coming, sun, keep it coming.

Update Feb 1

The past 3 days have been a complete turnaround from Tuesday and Wednesday's hole of depression. A friend of ours has a hot tub that they allowed me to use. On Thursday, I went and sat in the hot water and it felt ok, but my body and mind were so battered and tired - I really only enjoyed it superficially. The very next day, we went back and something in me snapped me around and I was able to smile at the blue skies and the sunshine - things that I physically was unable to do the day before.

Over the weekend, I had friends visiting and although if asked, I would have said I was too tired to see them, when they were actually there it was like a shot of rejuvenating energy. It was very helpful. As I do every night, I hope the trend continues upward and every day is better than the previous.

Now, if someone could just tell the sun that we're done with winter here and we need some heat...

Also, Bruce Springsteen rocked the Super Bowl. Anyone who disagrees is no longer my friend. Seriously.

Update Friday January 30th

It's been a few days since an update with good reason. The past days have been really tough to get through emotionally. I'll get to that all in a moment, let me deal with the trivial physical stuff first:

I'm still having a bit of trouble sleeping without getting night sweats. For instance, this morning I woke at 5AM soaked in sweat and just sat in a hot tub of water for 30-45 minutes, almost falling asleep. My appetite has been good. I'm going to need it. I'm down to 140lbs. This is not good.

All of this may have been affecting my emotions recently. On Tuesday, Sarah and I went for a walk around the block - the first time I'd done any physical activity outside of the house in quite some time. But rather than make me feel better, it actually struck somewhere inside of me to really upset me. My body, which led me up Africa's highest mountain one year ago, was now havig difficulty getting around the block. I broke.

And I broke. And I broke. And I couldn't control myself anymore. I was so tired - possibly from lack of a good night's sleep, maybe from malnutrition - but I couldn't stop myself from crying. I had never experienced anything like this before. And it continued on for the next day too - my body didn't want to move, I wouldn't say that I wanted to die, but I definitely didn't have anything inside to help me fight against it and this scared me.

All of my life, I had been the type of person who could deal with stress head on - putting things into perspective and finding some inner strength to get me through. Here I was feeling hopeless because I would sit on the couch and while not feeling particularly bad about anything at in particular, I would just cry. And I couldn't stop it.

If I was this weak now, how could I ever hope to be strong enough when this disease got tough?

I've been able to get out of this pothole for the time being with the help of some of my mom's Xanax, some sleep and lots of calls and emails from friends who have been super-supportive. But I have a new understanding of people who go through depression and need medication to help them. I never understood why, until now.

Update January 23

Just wanted to let everyone know how my two days after chemoembolization have gone. Yesterday, which was my first full day home from Hopkins after the procedure, was a loss of a day. I was extremely tired - seemingly sleeping two hours for every hour that I was awake. My appetite was low and I was basically in a cloud for most of the day. In the evening, I developed some low grade fever 101 F. But this was after feeling cold for most of the day.

Today has been much easier on the fatigue and appetite front, in the sense, that I had more of an appetite today - almost back to normal - and my fatigue was much lower. However, the annoyance today has been my body temperature. Although the thermometer is reading 98.6 - 99, every 30 secs to two minutes, I've had to deal with chills or sweats. Take my sweater off, put it back on. This has been tiring... I haven't been able to find a comfortable position to rest in all day. But if this is the worst of it all (more an annoyance than anything else), I'll be happy if my recovery continues so rapidly.

I did not take any pain medication today. Just one anti-nausea med in the morning (more for prevention than nausea), and my antibiotic. Hopefully, things are looking up, and looking up quickly. 

Update Jan 22

Thanks for all the well wishes. I know everyone has been concerned about how the chemoembolization (CE) went on Tuesday. By all accounts, it went well. Right now, I'm hopped up on pain and nausea pills so I'll post something more substantial in a few days when I can get my head out of the clouds.

Sunday Observation

I spent Christmas in Minnesota, getting a stent placed in my gall bladder. I will spend Inauguration Tuesday (arguably more important than Christmas) in Baltimore receiving chemoembolization. I wonder where I get to be for my 30th birthday on St. Patrick's Day?

Update Jan 14th - Don't TACE me, dude! Edition

After consulting with Dr. Jeff Geschwind at Johns Hopkins, I am going to proceed with Trans-Arterial Chemo Embolization. Dr. Geschwind, a major player in the field of cholangiocarcinoma, feels it has the best possible outcomes and we can do Theraspheres later if we're not satisfied with the results.

The biggest selling point for me was time until procedure. Theraspheres would take about 3-4 weeks (after angiogram and ordering beads etc.) whereas Dr. Geschwind is going to sneak me in late on Tuesday for the chemoembolization before he leaves for 10 days to Dubai, UAE on Wednesday. Sold.

Originally I was told by Mount Sinai that chemoembolization would be a dangerous option because my portal vein is blocked by the tumor and there is a possibility that by going through the hepatic vein all of the blood flow to my liver could be blocked off - which would be a major problem. Dr. Geschwind scoffed at this seemingly old-school thought process. He says that it is not a problem at all, that he has papers backing up his proposal and that he does the procedure all the time with blocked portal veins.

The chemoembolization procedure is similar to radioembolization (Theraspheres) where blood flow to the tumor is blocked off and the chemo drugs will be blocked in and delivered directly to the tumor over the course of some weeks. The drugs that will be used are Doxorubicin, Mitomycin, and Cisplatin. People react differently to this procedure some have very bad side effects, others have little to none. Obviously I'm hoping to be part of the latter group.

So Tuesday - down to Johns Hopkins. Procedure at 4:30PM. Stay overnight for observation. And hopefully enough energy to report back on Wednesday or Thursday.

Update Jan 11th

On Friday, I met with Dr. Philip Reid of the Central Jersey Oncology Group. Dr. Reid is going to be the "quarterback" of my treatment team - the doctor to lead me in the right directions, arrange scans and procedures, and make sure all clinical reports go to the right places.

After a discussion with Dr. Reid, I think Theraspheres at Johns Hopkins will be the right first step in my treatment.

Here's the gritty details for those who enjoy that kind of thing:
Theraspheres are a brand name for small beads which contain a radioactive element, Yttrium-90. This is a form of radioembolization. These beads are placed in the arteries that feed the tumor which has two effects: 1. It localizes the application of radiation, so that theoretically, only the tumor and not healthy tissue is being hit and 2. The beads can cut off some of the blood supply to the tumor (embolization) which is a necessity for the tumor cells to live.

Here's how the treatment works. I would go in to the treatment location on a specified date for an angiogram. This is a procedure where a catheter is inserted into a vein near my groin and fed upward toward my liver. A dye is presented into the arteries and scans are taken to map out the arteries and see which ones reach the tumor. Then non-radioactive beads are inserted into the arteries in a practice run of what will happen with the Theraspheres. The reason for this practice run is that if these beads do not stop their movement at the liver and continue on farther up the arteries, they will enter my lungs and adding radiation to the lungs can cause some very serious problems. According to one doctor I spoke with, the amount of allowable "shunting into the lungs" (passage of beads into the lungs) is 20%.

Hopefully all goes well during the angiogram and then an order is placed for the Theraspheres. These are made to order and delivered within about two weeks. At that two week point, I am brought back in for a repeat of the angiogram procedure, with the real beads this time. The radiation should attack the tumor for a period of about two weeks and then sometime after I would return for a scan to see what effect, if any, the radiation had on the tumor.

This method of treatment seems to be one of the least toxic/smallest amount of side effects and does not preclude any other treatment options further down the line.

Interesting enough, there is another brand name microsphere that is more widely available: SIRspheres. These beads are slightly larger and have a different medical dose of Yttrium-90. SIRspheres are approved for use against cholangiocarcinoma while Theraspheres are only in clinical trial state (though they have been approved for hepatocellular carcinoma - another form of liver cancer). In order to receive Theraspheres, I have to be approved for a clinical trial at one of the five locations that offer them: Mayo Clinic in Rochester MN; Johns Hopkins in Baltimore MD; Northwestern Memorial in Chicago IL; Albany Medical Center in Albany NY; and Wisconsin Medical College in Milwaukee WI. I would bet money in less than five years Theraspheres will be approved for cholangiocarcinoma treatment and will be available more widely as SIRspheres are currently. If I decide to follow up Theraspheres with SIRspheres (which is a possibility) I could go down the road to Robert Wood Johnson Hospital in New Brunswick, NJ.

My hope at the moment is that these radioembolization treatments will be able to shrink my main tumor to a reasonable size for resection (surgical removal) and I can deal with the other "spots" of cancer through my own immune system and dietary changes and supplements. I'm eager to get cracking. 

Update Jan 9th

Johns Hopkins meeting scheduled for next Tuesday.

Mount Sinai was not very exciting. The only thing learned is that they only do SIRspheres for cholangiocarcinoma. Theraspheres are for hepatocellular carcinoma - except in the clinical trial cases - which is what Johns Hopkins is up to...

Had an interesting phone call with Cancer Treatment Center of America (located in, among other places, Philadelphia). Talked about "treating the whole person", working together with naturopathic doctors and nutritionists. Everything sounds good. The difference between CTCA and other hospitals is that most other hospitals are connected to learning institutions or universities allowing them to apply for tax exempt status. CTCA is not. So it costs more but they don't have to follow such rigid guidelines as the others as far as treatment. Will be an interesting decision to make.  

Update January 5th, 2009

Not too much to report over the past week - been making alot of phone calls trying to get meetings set up. Tomorrow, I'll head up to Mount Sinai on the Upper East Side of New York City to talk with two doctors who have experience using Theraspheres to treat cancer. What is unclear is how much experience they have using the Theraspheres to treat cholangiocarcinoma. That will be the primary question that needs to be answered.

I received my clinical paperwork and PET and CT scan disks from Mayo Clinic. This means I should have less obstacles to making appointments with other institutes that require them. This has slowed arrangements with Johns Hopkins. Hopefully I can meet with them by the end of the week or early next week at the latest.

I am also arranging a meeting with an oncologist that works with Robert Wood Johnson Hospital in New Brunswick, NJ. Not sure who, exactly, that will be as of yet - but that oncologist will serve as my "manager" - giving me directions, setting up treatments, and hopefully looking over my scans.

I'm actually not taking much medication right now. Besides Lialda for my Ulcerative Colitis, the only other prescription I have is for Ultram ER which is a pain medication to help with my slight abdominal pain. I am, however, taking a ton of over-the-counter supplements. These include:

• A daily multivitamin (for general nutritional deficiency - in case I'm missing things in my diet)
• Fish oil (promotes healthy bones and joints)
• Vitamin D (because someone told me to)
• Milk Thistle Seed (helps cleanse the liver)
• Echinacea (for my immune system)
• Senna (for constipation - caused by the pain meds)

I'm also contemplating adding Beet root and mushroom extracts as they have been given praise from people on cholangiocarcinoma.org.

Update December 27th - Back in the Jerz edition.

Made it home to NJ yesterday. Feeling much better without the swollen gallbladder. Celebrated Christmas with the family last night.

On Monday, I'm going to start making phone calls to find a place to have treatment with Theraspheres. According to Dr. Roberts at Mayo, only five centers in the country are doing this trial for liver metasteses:

• Illinois Northwestern, Chicago, IL
• Mayo Clinic, Rochester, MN
• Johns Hopkins, Baltimore, MD
• New York Albany Medical Center
• Wisconsin Medical College, Milwaukee, WI

These may or may not be current. If they are, Johns Hopkins would be the closest choice. I'm going to make the phone calls to confirm and also to check into Robert Wood Johnson in New Brunswick, NJ - which offers SIRspheres. Seems like Memorial Sloan Kettering won't have Theraspheres until the summer or fall of next year (slackers). Regardless, I might be able to have my regular scans and endoscopes done at Robert Wood Johnson, and go to Johns Hopkins for the special Theraspheres treatment. That would definitely help with decreasing travel inconvenience.

Thanks to everyone who's sent thoughts, prayers, books, DVDs and other gifts. Everything is greatly appreciated and I'm humbled by the unexpected generosity of so many people. It reminds me that I'm not fighting this alone.

Stent This - Xmas Eve Edition

6:30 AM is too early to schedule an ERCP. But I guess since it's Christmas Eve, the doctors wanted to get in and get done and go home. So they IV'ed me up, and brought me into the procedure room. They had me lie on my stomach, filled me with the good juice (sedation) and away I went into dreamland. I woke up in a different room, and as my mom explained, I was also in a different building. Before I came to, apparently the drove me to a different hospital to recover.

During my ERCP, the doctors passed a endoscope through my mouth, esophagus, stomach and large intestine. Then the scope went into the duct that connects to my gall bladder. I'm fascinated how they knew where to connect to that duct. I imagine the scope headed down through the body and a large green sign that says "Gall Bladder Exit 2 - 50 cm - Keep Right".

I woke up with a sore throat and a sore abdomen. But apparently the procedure was successful and my bile duct that was constricted is now open (through the placement of a plastic stent into the duct) allowing bile to flow from my gall bladder to my intestine. This was the main cause of discomfort for me, so hopefully now, I will have a better appetite, which should equal more energy, and maybe I can put some weight back on. I'm down to 155lbs - from 175 a year ago, and 165 a few months ago.

Assuming no complications, I should leave here tomorrow and be able to catch our flight home on Friday evening back to NJ.